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High PSA level

User
Posted 07 October 2015 14:49:54(UTC)

Having been struggling with urination problems for 8 years, my GP recommended a PSA test which I had in April of this year.  The result was a PSA of 9 so I was referred to Urology and following a consultation I had a TRUSS guided 12 core biopsy at the end of May.  The result of the biopsy was negative, however a high grade PIN was found in one of the samples so a follow up consultation was arranged for 3 months with another PSA test.  I have just had the results and my PSA had increased to 14.  As the biopsy result was negative, the consultant didn't seem worried but has referred me for an MRI scan to get a better look at the prostate.

 

Although my GP and consultant don't seem concerned, my question is should I be or am I worrying about nothing.  14 seems like a very high score and an increase of 5 in 5 months seems considerable.  Has anyone else experienced results of this type?

User
Posted 07 October 2015 15:08:09(UTC)

Hi Alan
Im by no means special but read my profile ok . You need to keep on top of this but also be guided by the professionals. High PSA doesn't always mean high severity , its just your own benchmark or zero . But yes once found its rate of climb etc is very important . My first spotted PSA which caused alarm was 15 . It soon rose to 43 before surgery . I like you had a TRUS which was negative but many PINS ASAPS . I had 3 scans in all , and 3 biopsies , and still it was missed or grew too quick . I think your PSA climb and value means you will be pursued and not put on Active Surveillance
Wishes
Chris




If life gives you lemons , then make lemonade
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User
Posted 20 October 2015 12:03:11(UTC)
Alan,
As you will see from my conversations, my husbands contrast MRI scan showed a lesion that could not be classified as malignant or non malignant. The MRI used was a tesla1.5 which is the standard across 99% of the country as far as we understand. The radiologist was adamant that he has Prostatitis and the opinion was a biopsy would severely aggravate it if that were the case.
We have a tesla3 MRI booked for 4 November which should be able to define anormal more clearly - the image is likened to hd tv and requires no contrast dye. My husband has been on anti inflamatory meds, turmeric and no citrus or caffeine drinks and his PSA has cropped from 10.7 June, 9.5 two weeks later and now sine the above regime 7.6 after only a week of following it. He now has antibiotics as well.
Obviously this doesn't mean all is ok but we will see if it continues to reduce and also if the second MRI shows a reduction in the size of his prostate.
The lesion is in the apex and cannot be biopsies with a transrectal biopsy so it will be needle guided MRI /ultrasound transperineal biopsy under general if that's the advice.
His consultant is of the belief that the Prostatitis is most likely the cause of his erratic rising and falling PSA over 5 years. Let's hope they are right and the original biopsy that was transrectal didn't miss this same lesion.

Hope this is of use :-(
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User
Posted 20 January 2016 06:03:33(UTC)

hi alan
hope you get the answers you required, I think its rubbish that we have to resort to complaints to get the treatment we require, I still think it all comes down to cost, and if they dont ask for it then we have saved x amount of money, cause you can bet your bottom dollar if you where a private patient ten I think you would get every test possable

regards
nidge

run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
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User
Posted 07 October 2015 14:54:44(UTC)

Hello Alan.
Just to say welcome.

There are many experienced people on here who will be along to give you advice so hang on.

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 07 October 2015 15:08:09(UTC)

Hi Alan
Im by no means special but read my profile ok . You need to keep on top of this but also be guided by the professionals. High PSA doesn't always mean high severity , its just your own benchmark or zero . But yes once found its rate of climb etc is very important . My first spotted PSA which caused alarm was 15 . It soon rose to 43 before surgery . I like you had a TRUS which was negative but many PINS ASAPS . I had 3 scans in all , and 3 biopsies , and still it was missed or grew too quick . I think your PSA climb and value means you will be pursued and not put on Active Surveillance
Wishes
Chris




If life gives you lemons , then make lemonade
Thanked 1 time
User
Posted 07 October 2015 16:03:43(UTC)

Hi Chris, your profile shows you have really been through it, sorry to hear that you are having such problems.  From your experience, it is clear that a negative biopsy is no guarantee so I will see what comes back from the scan and then keep pushing for investigation.  I think I am right to be worried as the rapid rise of PSA I think shows something is not right.  I was thinking of asking for a free PSA test, and if they don't agree pay to have one done privately as the percentage of free PSA could at least provide some additional information to be used in the diagnosis of the problem

User
Posted 07 October 2015 16:26:50(UTC)

I don't think I ever had a " free " PSA done Alan . Given your obvious urinary problems as well I would expect they are well on the ball ........but people do get missed .




If life gives you lemons , then make lemonade
User
Posted 07 October 2015 18:01:21(UTC)

I don't think a free/total PSA test is done routinely in this country, but the tests are readily available and not that expensive so if the GP wont send me for one I think I will just pay and have it done myself. Of the two types of PSA present in the blood, free PSA is an indication of benign prostate issues and protein bound PSA is associated with malignant conditions. From what I have read, free PSA levels below 20% is a good indicator of malignancy. It has to be worth a blood sample for some additional diagnosis

User
Posted 09 October 2015 12:30:51(UTC)

Just had my MRI scan date through. despite informing urologist that I am away 21st to 28th, as usual appointment came through for 28th, so that has been cancelled and now got a new date of 5th November. I also spoke to my GP and got more details about my previous tests

PSA in April 8.9
Ulrasound biopsy, prostate volume calculated at 54cm (so just over double the size of normal)
PSA in September 14.7

Is it possible that the biopsy in May could have caused prostatitis which could explain the rapid increase in PSA?  Just hoping there is a simple explanation, as I was very relieved when I got the results of my biopsy and now I am back to being very worried, even more so now as the PSA is outside the normal range for BPH

User
Posted 16 October 2015 22:39:55(UTC)
Take a look at my profile re Prostatitis and PSA.also conversation... Unexpected honesty from consultant etc You could be similar to my husband. And free PSA doesn't seem to be offered on NHS unless you ask!,
Private post if you want to.
Previous husband biopsy resulted in a drop to lower than normal and it looks like (5 years on!!) that he's had Prostatitis all along and it was never raised as a subject by consultant or GP Hope conversations help
User
Posted 20 October 2015 10:39:06(UTC)

I was having a blood test last week for another reason and asked the GP if they would repeat the PSA test which they did. It has shown another increase, although not as large this time.

13/04/2015 8.9
16/09/2015 14.7
16/10/2015 15.0

So an increase of 0.3 in a month and an increase of 6 in 6 months. Could this level of increase be caused by prostatitis or is it more likely that the biopsy missed a malignancy? I have a contrast MRI scan booked for 5th November but I am obviously concerned about the continuing increase in PSA levels

User
Posted 20 October 2015 12:03:11(UTC)
Alan,
As you will see from my conversations, my husbands contrast MRI scan showed a lesion that could not be classified as malignant or non malignant. The MRI used was a tesla1.5 which is the standard across 99% of the country as far as we understand. The radiologist was adamant that he has Prostatitis and the opinion was a biopsy would severely aggravate it if that were the case.
We have a tesla3 MRI booked for 4 November which should be able to define anormal more clearly - the image is likened to hd tv and requires no contrast dye. My husband has been on anti inflamatory meds, turmeric and no citrus or caffeine drinks and his PSA has cropped from 10.7 June, 9.5 two weeks later and now sine the above regime 7.6 after only a week of following it. He now has antibiotics as well.
Obviously this doesn't mean all is ok but we will see if it continues to reduce and also if the second MRI shows a reduction in the size of his prostate.
The lesion is in the apex and cannot be biopsies with a transrectal biopsy so it will be needle guided MRI /ultrasound transperineal biopsy under general if that's the advice.
His consultant is of the belief that the Prostatitis is most likely the cause of his erratic rising and falling PSA over 5 years. Let's hope they are right and the original biopsy that was transrectal didn't miss this same lesion.

Hope this is of use :-(
Thanked 1 time
User
Posted 20 October 2015 19:28:35(UTC)

Thanks for the reply, I was wondering if the biopsy I had in June could have caused/aggravated prostatitis. My PSA of 8.9 in April was borderline for BPH with a 54cm prostate, so just about in the boundaries of normal for that size of prostate which is significantly enlarged and the biopsy reveled no cancer but a single high grade pin. I can't tell you what a relief that was or what a shock it was when my PSA jumped by 66% in the space of 5 months. That kind of PSA velocity is so far off the scale that I can't find anyone even discussing it. I have my MRI scan in a couple of weeks so I guess I will wait and see what the results are. If you don't mind me asking, where are you having the telsa3 MRI done and how much is it? PM me if you would rather not share in public.

Thanks Alan

User
Posted 30 November 2015 22:45:41(UTC)

Well after a two month wait I finally got my results of the MRI scan today, but only after I called the consultants secretary for the 5th time.  Turns out a letter was sent out last Monday, but to the wrong address (sent it to my GP not me), anyway he read it out to me.  All it says is that there was nothing of concern on the scan but that he still wants to keep an eye on me so he is arranging a follow up telephone consult for 6 moths time.  No explanation/speculation as to the possible cause of my seriously elevated PSA, no further investigation planned, not even a repeat PSA test.  I have said that I am not happy with that and I am not prepared to wait 6 months with a PSA of 15.0, so he is asking the consultant to give me a call this week or next.  I will ask for a Free/Total %age PSA test as a minimum.  It could be the issue is prostatitis but I think an increase of 6.1 in 6 months should at least get some further investigation

User
Posted 15 January 2016 15:01:51(UTC)

As I never got a satisfactory explanation regarding my diagnosis following my MRI scan, just a letter stating "your recent MRI scan and essentially it doesn't show anything worrying", which I read as it does show something but I am not worried about it and I am not going to tell you what it is. When I asked for a callback from the urologist to discuss, I simply got another letter which this time stated "I just wanted to reassure you that sometimes the PSA can rise but in your case this is not a worrying feature. I have used all the pieces of the puzzle to characterise your clinical condition. Your MRI was very encouraging and all we need to do is keep an eye on things with a follow up in six months", which I read as there is something going on I have no idea what is causing it but I am not going to investigate further.

I then wrote a letter posing specific question at the begging of December re my diagnosis. I called his secretary 3 weeks later who confirmed it had been received but not responded to yet. I called after Christmas to be told they couldn't find the letter, so I emailed a copy to them. I am still awaiting a response from the urologist regarding my questions re diagnosis but I spoke to the urologists secretary today and advised that if I didn't have a response by Monday that I would be raising a complaint, lets see if that stirs any action. I expect not.

I was having a blood test on Monday for something else and asked my GP to include a PSA test which they kindly did. It has stayed the same, so still at 15, so at least it hasn't gone up in the last 3 months, but still no explanation as to why it is so high. It is now 7 months since my biopsy, so if the elevation was as a result of the biopsy, then I would have expected it to have settled down some by now.

User
Posted 19 January 2016 22:07:59(UTC)

Well threatening to raise a complaint if I didn't get a reply seems to have worked. The urologist called me and went through things. "your recent MRI scan and essentially it doesn't show anything worrying" does in fact translate to there is something there, we just don't know what it is. In his words, there are a couple of fuzzy areas, but the radiologist scored it about 2 out of 5 on the worrying scale. Anyway, he then went on to suggest that it might be a good idea to go ahead with a template biopsy. Not sure why the change, might be that my PSA is not decreasing when he expected it to, or just to shut me up. Either way, I should at last find out if there is anything going on in there

User
Posted 20 January 2016 06:03:33(UTC)

hi alan
hope you get the answers you required, I think its rubbish that we have to resort to complaints to get the treatment we require, I still think it all comes down to cost, and if they dont ask for it then we have saved x amount of money, cause you can bet your bottom dollar if you where a private patient ten I think you would get every test possable

regards
nidge

run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
Thanked 1 time
User
Posted 25 January 2016 09:09:45(UTC)
Pleased you are getting answers Alan, shame you had such a long wait. We get transperrineal fusion biopsy results today, by phone at 6pm. still a mystery as to changing prostate size, 48 then 33 and last Monday 39 when they took 26 samples - no wonder OH is uncomfortable there's not much space for that many samples, but as you say we will have a definitive answer - 9 hours left to wait!!! As you are aware, we went down the private route as mri3 and transfusion biopsy not available to us. Great care and results in a week, due to 300 mile distance from us to hospital, phone call discussion is the only option but the NHS consultant booked an appointment 3 weeks to the day so that we see him as soon as possible so we can't really complain about our care.
Will post results once we've got our heads round them or sobered up once we've stopped celebrating 😊
User
Posted 25 January 2016 20:33:34(UTC)

Ok so. Prostate cancer confirmed Gleason 6 3+3. 6 out of 26 cores all in one small location on one side. Consultant gave all options, treatment options etc etc but strongly suggested we use active surveillance. See NHS consult on 8th Feb

User
Posted 27 January 2016 17:21:25(UTC)

Sorry to hear that Susan, but at least you now know and can do something about it and it has been diagnosed in plenty of time before it has had chance to spread. How is the OH after the transperrineal biopsy? Has he recovered OK? Any after effects?

User
Posted 27 January 2016 19:17:19(UTC)
Hi susan,sorry to hear your news but pleased all sounds very localized and you have full range of treatment choices. As you know my oh had active surveillance for 2 years before he had to have treatment,some people manage a lot longer than that. Best wishes Fiona
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User
Posted 29 January 2016 00:01:35(UTC)

Hi Alan,
OH has recovered well considering 24 biopsies and the journey etc. Constipated at first but that was the codeine and the swelling made him feel he needed to go but couldn't!! Very tired, but we think it's the wind down after waiting etc. First MRI was September so it's been a while. Quite a lot of blood in urine so he took to sitting down so he didn't see it and large amount in semen, far more than with transrectal biopsies. No probes passing urine but then he didn't before so less chance this would be a problem. We are now just feeling exhausted and a slow house purchase also taking place and not seeing our family who live abroad since last April are all adding to fatigue 😔 I guess our concern now is the balancing act of what/when the time is right for treatment in the future.. Histology report arrived Tuesday by email so it was good to be able to read it, not just hear the consultants report by phone. 2 cores with cancer and 4 high grade pin all in the same location - a very small area on MRI 6x4mm so we are pleased we paid for the fusion biopsy as the NHS consultant admitted he could miss it with standard transperrineal procedure. It's believed the transrectal biopsies 5 years ago may have missed this, so we feel he's already had 5 years of surveillance and hope in a way that's a good sign that it will remain as not aggressive but also that things could move forward sooner rather than later.


Thanks for your message and you as well sofijoan, they are appreciated

User
Posted 12 December 2017 22:36:07(UTC)

hi all, i seem to be starting down similar path. my PSA 60 seems high? prostate is large firm and lumpy after the dreaded finger up the bum MRI has come back as abnormal and several areas of interest no one is talking just told me to wait for biopsy results. how worried should i be?
Andrew

User
Posted 13 December 2017 00:19:17(UTC)

It seems that the medics have given you lots of information and are probably assuming that you have understood the implications. Nothing is certain until you get the biopsy results but:-
- your PSA of 60 is 20 times higher than 'normal'
- a hard prostate is indicative of cancer
- a lumpy prostate is highly indicative of cancer
- the abnormal scan is highly indicative of cancer

Since you have all of these indicators, I think you should prepare yourself for a diagnosis of prostate cancer. While you are waiting you could order the toolkit from this website and start reading about different stagings and grades- this will help you to plan any questions you might want to ask at the appointment. Bear in mind that not all treatments might be available to you though.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


 
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